Anyone had both their pancreas and spleen removed?

Hi @behr66 - I had a total pancreatectomy and splenectomy in 2019 as a result of neuroendocrine tumors from MEN1.

The two immediate impacts to the pancreatectomy are diabetes and enzyme insufficiency. I use an insulin pump and CGM for blood sugar control and take Creon to aid in digestion. Creon is expensive without insurance and dosages can vary based on weight and diet.

It took me a bit to get those dialed in and lead a fairly active life now. From a splenectomy point of view, there is an increased risk of certain infections so I am sure to get pneumonia vaccines, flu shots, etc. as required and avoid crowds in the cold/flu season.

Happy to help if you have any other questions. Take care.
- Matt

It is customary to remove the spleen, esp if tumor is in the body or the tail.
I had a pancreadectomy, not a whipple. They simply gave me a wealth of vaccines afterwards (two years ago). Have had no bouts of illness and did not contract diabetes.

My understanding was that an artery that feeds the spleen runs through the pancreas.
Standard practice is to therefore remove the spleen with even a partial pancreatectomy.
In my case if I recall from four years ago, it was removed with some self-administered antibiotics given for a month. No ill effects here.

Hi Hugh,
I am about 2.5 months past distal pancreatectomy with splenectomy. I have been lucky, no diabetes and enzymes working as usual, no digestion issues. I have a secondary medical condition that impacts my immune system so with no spleen, the doctor does have me on prophylactic amoxicillin. We will revisit that in several months to continue or not. Some countries medical systems recommend this for two years. So, surgery on the pancreas caused nothing that I pay attention to, but the missing spleen has me on a fine line between vigilance and paranoia. I am wearing a mask out in public and working from home until the flu dies down. That's why hearing from Matt was so reassuring too, that he's done well for many years.

@behr66, I think you will find these related discussions helpful along with the helpful posts you've already received from @matt2024 @gamaryanne @bzabeli and @anne7573217

- What's recovery after distal pancreatectomy and splenectomy like?https://connect.mayoclinic.org/discussion/recovery-after-distal-pancreatectomy-and-splenectomy/
- Foods after Pancreatectomy/Splenectomy https://connect.mayoclinic.org/discussion/foods-after-pancreatectomysplenectomy/

See the group search results for all related discussions: https://connect.mayoclinic.org/group/pancreatic-cancer/

Hugh, have you been scheduled for surgery? How are you doing?

I had both pancreas and spleen removed 2 years ago am on Enzymes for digestion. My biggest problem is I cannot gain weight.

I lost 75 lbs in 12mos from stage 1 dx of PC to the all clear in such a short time. I did it have nausea or loss of appetite due to chemo or Whipple surgery. I needed to lose more for a normal BMI but I had been happy maintaining a 5.7 - 6.3 A1C as an overweight diabetic over 25 years with no issues and with out needing insulin. Then PC showed up. My oncologist, post Whipple, suggested maintaining my weight would be a better option instead of trying to lose more. He scheduled an appt with a nutritionist for me. She has helped me maintain my weight and still absorb the important nutrients I need to feel better. I take a Rx for EPI and I wonder if it has any effect with regards to stalling weight gain? I try to follow the diabetic guidelines with regards to portion size. And I still have a low carb snack and 3 meals a day.

@baravelli I cannot gain weight two years after pancreas and spleen removal. What are you taking to maintain weight?
Where is your doctor from?

Gordon